Erica Kane
11-04-2006, 12:35 AM
That's me. I was diagnosed in 1990. My first MRI came up clear (of course MRI was in it's infancy back then, but still), and my diagnosis was based upon recurring MS-like symptoms and a positive evoked response test.
Ever since then, I've probably had 4 more MRI's - always comes back "normal brain", yet my neuro stands by the MS diagnosis. He's one of the top MS doctors in the country, so I am OK with the diagnosis - but am I the ONLY person on Earth who has MS, but good MRI's?:confused:
Ever since then, I've probably had 4 more MRI's - always comes back "normal brain", yet my neuro stands by the MS diagnosis. He's one of the top MS doctors in the country, so I am OK with the diagnosis - but am I the ONLY person on Earth who has MS, but good MRI's?:confused:
Sponsor
duttin
11-04-2006, 09:37 AM
Good Morning Erica,
You're not alone.I was diagnosed with a clean MRI also.I had many test that led to my Drs.DX.5-10% of the people that have MS don't have lesions,the MS is confined to the spinal fluid.I have had 2 LP's and both have came back with highly elevated myelin basic protein.Since my DX they beleive that there is one lesion in the occipital area.Radiologist says no neuro says yes.I just have learned to go with the flow and except the DX.
Toni
You're not alone.I was diagnosed with a clean MRI also.I had many test that led to my Drs.DX.5-10% of the people that have MS don't have lesions,the MS is confined to the spinal fluid.I have had 2 LP's and both have came back with highly elevated myelin basic protein.Since my DX they beleive that there is one lesion in the occipital area.Radiologist says no neuro says yes.I just have learned to go with the flow and except the DX.
Toni
Erica Kane
11-04-2006, 02:45 PM
Good Morning Erica,
You're not alone.I was diagnosed with a clean MRI also.I had many test that led to my Drs.DX.5-10% of the people that have MS don't have lesions,the MS is confined to the spinal fluid.I have had 2 LP's and both have came back with highly elevated myelin basic protein.Since my DX they beleive that there is one lesion in the occipital area.Radiologist says no neuro says yes.I just have learned to go with the flow and except the DX.
Toni
Toni, I'm so glad to hear I'm not the only one. I once heard (I don't even remember where), that the only definitive way to prove MS is by cutting open the brain at an autopsy - that perhaps after I die, they will find lesions - but I'm willing to wait for that particular concrete diagnosis.;)
You're not alone.I was diagnosed with a clean MRI also.I had many test that led to my Drs.DX.5-10% of the people that have MS don't have lesions,the MS is confined to the spinal fluid.I have had 2 LP's and both have came back with highly elevated myelin basic protein.Since my DX they beleive that there is one lesion in the occipital area.Radiologist says no neuro says yes.I just have learned to go with the flow and except the DX.
Toni
Toni, I'm so glad to hear I'm not the only one. I once heard (I don't even remember where), that the only definitive way to prove MS is by cutting open the brain at an autopsy - that perhaps after I die, they will find lesions - but I'm willing to wait for that particular concrete diagnosis.;)
shellymay
11-04-2006, 03:42 PM
I just want to know how you get a doctor to listen to you when you do have clean MRI's. It seems if you don't have any lesions they don't want to listen to you. I have had two evoked potential test that were not normal, but yet I have no lesions so that dismiss me.
Michelle
Michelle
duttin
11-04-2006, 09:14 PM
Erica,
I do agree an autopsy is out of the question.
Michelle,
Be persistant,a good neuro is hard to find.It took me three.Question your Doctor about the abnormal evoked potentials and don't let them give you a bunch of bull.Get copies of all your test and reveiw them yourself.
Toni
I do agree an autopsy is out of the question.
Michelle,
Be persistant,a good neuro is hard to find.It took me three.Question your Doctor about the abnormal evoked potentials and don't let them give you a bunch of bull.Get copies of all your test and reveiw them yourself.
Toni
shellymay
11-04-2006, 11:27 PM
nuffs3,
Thank you!! It's easier said than done to be persistent. I know that I need to but since my last visit about 6 months ago and he told me that I needed to see a psychiatrist. I lost it. I have not been back to him and I have given up hope. I have just started dealing with everything and swore that I wouldn't go back. But you are right, I do need to find another neurologist and continue the quest to find out exactly what is wrong with me.
Michelle
Thank you!! It's easier said than done to be persistent. I know that I need to but since my last visit about 6 months ago and he told me that I needed to see a psychiatrist. I lost it. I have not been back to him and I have given up hope. I have just started dealing with everything and swore that I wouldn't go back. But you are right, I do need to find another neurologist and continue the quest to find out exactly what is wrong with me.
Michelle
Kymtnms
11-17-2006, 07:44 AM
I'm another who has an MS diagnosis with no lesions. My diagnosis is based on high myelin protein levels and O-bands found in my spinal fluid, borderline evoked potential tests and MS like symptoms going on for over 2 years. I went to 4 different neurologist before I found one who did a 2nd spinal tap to find the O-bands. The first one was looking for other things on the spinal tap, not MS. Even the one who finally decided it is MS is second guessing himself because there are no lesions and wants me to see another neuro to confirm his diagnosis but I haven't yet. The only thing you can do is keep seeing neuro's until you find one who will do the right tests and find the results you are comfortable with.
Lynne
Lynne